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11-26-2012, 06:18 PM   #1
Gabi
 
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In hell

Hi guys this is my second post so I've no idea what Iím doing!
I took ill in April 2012 with diarrheal vomiting extreme abdominal pain right side and left lower. I knew something serious was wrong as I couldnít eat a bite and I felt awful and slept all day and night if the pain would let me. I was then admitted to hospital with a suspected appendicitis the Doctor gave me 10mg of Morphine and this still didnít help. Initially they thought it was renal so they scanned my kidneys and bladder and done a lot of urine tests. At this point I was able to keep water down so I wasnít overly dehydrated so I didnít need a drip. They let me home after three days in and the following day I ended up back in a+e with the pain and this time they seemed to take me more seriously they ran more blood tests but they saw nothing. They let me home again undiagnosed. I continued to get worse and then I started bringing up water and blood in the stool so I went to a different hospital, they sent me home from a+e three times and said that there is nothing wrong with me as my x-rays were fine and my blood tests were ok. Another time I went back into casualty and because I was so badly dehydrated they couldnít get a vein so they kept me. Eventually they got blood and it showed elevated CO2 levels and low enzyme levels. They got me rehydrated on the drip and done a small bowel series which showed up nothing. I was then sent home after I was rehydrated. So I went back to a+e and they kept me again this time they seemed to be more understanding and referred me to a GI (who Iím still with) over the following months he performed 3 colonoscopies, two endoscopies, MRI scan (without dye as they couldnít get a vein) CT scan with dye and a pill cam test. They all came back clear however the only test that seen my small bowel properly was the pill cam and it ran out of battery!!!! Two weeks ago my GI said he canít find any IBD but I've begged him to keep me on and do the pill cam test again. He thinks I have severe IBS, but I have so many symptoms that donít add up such as weight loss, bleeding, vomiting etc. I also have begged him so a laparoscopy and he said he will not do it.
Iíve been taken of my pain killers now (tramadol and oxynorm max daily dose) as they do not think I need them.
I have had to withdraw from uni as I canít move from day to day and I am so weak.
Iím in hell as I am convinced it has to be IBD as my cousin has it and I've been going through the exact same thing.

Can anyone please shed some light on this?
All I can rely on is that the GI has missed something.
11-26-2012, 06:23 PM   #2
SarahBear
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Hi, Gabi! Welcome to the forum!

Don't let them tell you IBS if you're having bleeding. It sounds more like IBD, and I agree that it might be best to have another pill cam done - especially since your cousin has IBD. May I ask what your cousin's exact diagnosis is?

Also, here's a link to the Undiagnosed Club, where you can find people going through very similar situations as yourself!
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11-26-2012, 06:31 PM   #3
ForeverCrohns
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Hello Gabi
Welcome to the forum!
I agree with Sarah this sounds like IBD I understand your frustration as it took me a year to get diagnosed .. You have to insist on doing more tests and getting the right diagnosis..

Feel better!
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11-26-2012, 06:32 PM   #4
Gabi
 
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Hey he was diagnosed with CD
I kept saying to him in the consultation But Im bleeding and he kept saying I cant find the crohns but i really think he has missed it or something
11-26-2012, 06:35 PM   #5
SarahBear
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It does sound like there's something going on in there. If there's blood, there has to be a source of it somewhere!

Hopefully you'll find some answers soon. Could you possibly see a different GI, if this one refuses to do anything more for you?
11-26-2012, 09:33 PM   #6
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I was diagnosed recently with crohns. During my colonoscopy the GI doc also noted internal hemorrhoids which was partly responsible for my bleeding. I'm now on remicade and prednisone and the bleeding is still present but can be attributed to the hemorrhoids. It sound like a classic case of crohns to me because I had all the same symptoms that you described. Be persistent with the doctors. My daughter was recently diagnosed with celiac disease and continues to have all of the symptoms of crohns or ulcerative colitis. The doctor did a colonoscopy and said she had celiacs and nothing else. We think he was so focused on the celiacs that he really wasn't looking for something else. We switched doctors. We have another appt with him next week.
11-26-2012, 09:43 PM   #7
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Gabi,

I am so sorry to hear about how hard this has been for you! I can only imagine how frustrated you must be. Doctors like to know the answer, and when they don't, they can be dissmissive unforetunately. I definitely think finding a doctor who will work with you is what you need. Even if you don't have a name for it, just keep asking what can be done to make you better. And keep asking until you find someone will to work through it with you. Good luck. I am thinking of you.
11-27-2012, 02:37 AM   #8
PlutoCronie
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Gabi,

I am so sorry to hear about how hard this has been for you! I can only imagine how frustrated you must be. Doctors like to know the answer, and when they don't, they can be dissmissive unforetunately. I definitely think finding a doctor who will work with you is what you need. Even if you don't have a name for it, just keep asking what can be done to make you better. And keep asking until you find someone will to work through it with you. Good luck. I am thinking of you.
Hi, Gabi, welcome to CD Forum. I agree with Magnolia; find a M.D./G.I. who will work with you. You might want to explore this site, also, and see if there are other members who have had similar symptoms. I've had the bleeding and that really scared me. It subsided when I altered my eating habits so that I kept the inflammation low. Good luck to you and you will be in my prayers.
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11-30-2012, 07:08 PM   #9
Gabi
 
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I've got referred to a new GI I hope to God this helps this time :,(
Thank you for all your replies I really appreciate them all.
Xx
11-30-2012, 09:27 PM   #10
PlutoCronie
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Gabi -- Please let us know how the new GI works out.
11-30-2012, 09:46 PM   #11
Gabi
 
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I will- it's my last hope
Thanks a lot
11-30-2012, 10:18 PM   #12
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Wow, that's bad. I thought it was almost common knowledge that IBS and bleeding weren't play buddies.

Please don't give up and keep trying. In the end, you'll always have the option to try a different doctor, and believe me there are doctors who will listen to everything you have to say. I had a doctor test me for diabetes minutes after an off-hand comment about how I was feeling cold. Thankfully negative, but all I ask is you know they're out there.
11-30-2012, 11:29 PM   #13
afidz
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Hello!
I'm so sorry to read what you have been through. To me itsounds like some type of IBD, especially if there is blood. Hopefully the new GI can find more answers than the first. I know your frustrated, just keep at it. In the mean time try controlling it on your own if you can. Have you changed your diet? Talk to your cousin about supplements that he takes and what foods work for him. A low residue dist is usually suggested, but everyone is different. Check out the diets section on the forum and see if that helps. Hope your new doctor helps!
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12-01-2012, 11:03 PM   #14
Gabi
 
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Thanks everyone again. So far no diets have worked unless I don't eat- that is really helpfully but not so much for day to day functioning! I just know that it probably will be a long time before I get a diagnosis. Also I really need pain relief but my GP just says its detremental in the long term. Also I can't sleep or really go anywhere. I'm sure you all know this but I can't believe I've gone from a healthy person to a very ill person so quickly. Plus it doesn't help when doctors look at you so unsympathetically and just say try to take your mind off it and not let it run your life- I would like to see them do it for one day or see one of their close family members go through it. Any doctors I've delt with don't know the meaning of the word empathy or sympathy for that matter.
12-01-2012, 11:37 PM   #15
lynx
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I know it what you are going through is unbearable at times..if not all the time..I also know what it is like to go from being healthy one minute and the next being completely sick. Just a bit of encouragement here, which is not patronizing I hope, don't give up on finding the right doctor to treat you and while you are sick try to stick with liquid for nourishment if you can. Also, if you don't already, take a multi vitamin daily at the very least. If you have access to it get some Slippery Elm powder and make a gruel out of it. I know that sounds pretty gross but it is actually very good for you and your whole GI tract. I hope you find relief soon. It really sucks being sick...i have had the displeasure of spending on two different occasions two months in the hospital because of this disease. Try to avoid that at all costs lol...I hope you feel better soon!
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12-01-2012, 11:58 PM   #16
PlutoCronie
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Hi Gabi --- I relate to what you are saying, especially about becoming ill seemingly overnight. But, please hang in there and for the time being, try to stay hydrated. Try some different herbal teas, also, as well as the "Slippery Elm"
remedy. I also understand your frustration over having to deal with the medical establishment. For now, though, try to keep learning all you can about IBD. There are people who have had remarkable recoveries from what seemed to have been near hopeless situations.
12-02-2012, 12:18 AM   #17
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Gabi, I understand what your going through. 26 yrs ago I was diagnosed with CD. It almost killed me before we got it under control. But the worst time was the more then 2 yrs before they could discover what was wrong. I was told "It's just in your head." and "It's a nervous stomach. You'll just have to learn to live with it."
When I was finally sent to a GI I had went from 155 lbs to 118 lbs. I couldn't even keep a little water down and I had been passing out due to loss of blood. My wife took me into the E.R. one night and the next day my new G.I. did a scope and it finally showed up. It was a long road finding it and it was a long road getting it under control. I had gangrene in my stomach from all the inflammation and had my stomach pumped for 7 days. In the first 2 months after being diagnosed I received over 10 units of blood and had my stomach pumped twice while trying to get back to normal.
Now 26 yrs later I've been fairly good because I am on Remicade. I have a great support system that has stood strong with me and help me keep my sanity when things are bad.
Keep strong and never stop asking questions when you talk to your Drs. No question is stupid and any question may be the one to lead to your Diagnoses and your road to recovery.
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12-04-2012, 11:04 PM   #18
Gabi
 
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Sorry to hear all your awful stories about how you all eventually got diagnosed. It seems CD seems to be a difficult one to catch- what a pity. My doctor has put me on sleeping tablets as he says sleeping is very important at this time but I'm so sick of being medicated like a vegetable. I would love to be able to look to the future and plan my life and be in control again but I'm not. I don't know what to do to make my GI understand clearly he hasn't got crohns! Right now life is unbearable and I can only hope I get diagnosed soon. My mum keeps telling me a squeaking door gets fixed and to keep calling my GP and GI but I think they just think I'm a mad woman!!
Thank you all for your replies it means so much to me to know that I'm not alone and that I'm not insane!!
Xx
12-15-2012, 03:15 PM   #19
nativesith
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I feel for you, I am in the same boat right now. 5 Years I have been feeling these symptoms. I am so sick of doctors and hospitals who seem to ignore our pain.
I have two scopes booked for Dec 27 and I can not wait. I prey to the creator so we may find some relief for our pain.
12-15-2012, 03:35 PM   #20
Gabi
 
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I know but you have done so well to get through five years- that's is a credit to you to keep it together after all that so firstly well
done and secondly thanks for replying. I don't understand why the doctors don't seem to care, they seem to have no empathy at all. Any tips on how to control the pain?
12-15-2012, 03:56 PM   #21
nativesith
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I try to do the liquid diet, which really helps. The pain seems to lessen.
I wish I knew that a long time ago.
It is hard...I wish we had pain free lives. We know pain all to well.
The whole time ,not knowing what it was, I was begging for pain relief. Most doctors would not listen. They did numerous tests like Blood, Xray,CT,etc and found nothing. They would give me something like extra strength Tylenol or Ibuprofen(which makes it way worse).
I was forced to treat myself almost this whole time. I ingest Native American medicine, which does help. I also buy codeine. I am not proud of it. My tolerance for it is high now. But what choice did I have? Months went by and I could barley get any sleep. My days were dazed,confused,and full of pain.
Hell is the only word that comes close to what I experienced these past 5 years. The pain was soo bad I did not notice I began walking with a limp about a year ago. When the pain is not bad I can walk almost normal. When it is bad I move very slowly. I did not notice until a doctor pointed it out.
12-15-2012, 06:18 PM   #22
Gabi
 
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I really feel for you and I really hope you get some results soon. I've had every test but they all have failings. The colonoscopy showed nothing but they can't view the small bowel- well all of it. CT nothing bloods nothing small bowel series nothing. However I know I have more than IBS and I know my doctor knows this too. All my bowel hasn't been viewed perfectly- I'm begging for a laparoscopy of my abdomen but they say its too invasive and due to my low weight they are worries about the anaesthetic. The pain kills me everyday, I have the limp too my partner pointed it out. I'm losing my hair and to me that's the worst I know that sounds vain but its all I have left. I wish things were different for both of us. Also just wondering are you fit for work/ study? And do your friends and family agree with you?
12-15-2012, 06:38 PM   #23
ForeverCrohns
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Gabi can't the doctor at least work with your symptoms and treat your current problem? You need at least nutrition and treatment for your anemia .. My sister's crohns took a very long time to be diagnosed but the doctor gave her all the meds to control it based on her symptoms. But also he did that based on our family history of crohns. I advise you to speak to the doctor on how he can make you feel better till they figure out what's wrong.
12-15-2012, 06:46 PM   #24
nativesith
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When it first started I was a Painter/Sandblaster making very good $. But it was a hard job with alot of heavy lifting and dangerous situations. There I was in pain and on strong painkillers making me drowsy and the situations became more dangerous. So I quit and went back to school. At first I did well gaining my High School diploma and going on to post secondary. The pain got worse and it was all I could think about. I could not concentrate on my subjects. I began to miss a lot of classes and even failed a few. I was puking bile in the bathroom of the school and I began to feel very self conscious about it. Panic attacks started happening. School officials really pushed me to take a year off and try to get better. It was after that I had the worst attack of my life. Now here we are. I can not work, I am losing all my valuables, I am in debt. My family doctor(visited him yesterday er the day before, my mind is cloudy)and he stated I should/could be working right now and throughout the whole time I felt like this. I did not want to say anything to him, in fear of what I would say. I was soo angry and upset after that.
Everyone can tell something is wrong with me, I lost soo much weight with the past few years and I look terrible all the time.
I too am anemic taking b12.
12-16-2012, 02:18 PM   #25
Gabi
 
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Yea I was working and in university too but I was advised to take a year out ad I'm still not back and I can't ever see myself going back or being well for that matter. I'm afraid of buying pain killers as they don't seem to always be what hey are but te pain is terrible. I might try the liquid diet but that could be easier said than done, does it not make the diapreaha worse? At the minute I will try anything.
My doctors aren't working with me and the symptoms they are happy to give me anti-sickness tablets but pain killers are another story. I'm ashamed to say I wish I knew where to buy them
My family seem to be somewhat on my side but it does stress people out an the do get sick of it.
12-16-2012, 02:27 PM   #26
ForeverCrohns
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Liquid diet helps a lot it gives a chance for ypur intestines to rest .. Also dicrease suger because it makes diarrhea worse and increase your salt intake it will make your diarrhea better. Drink gatorade to help you replace the electrolytes you are losing with the diarhea.. And stay away from NSAIDs as they increase bleedig stay away from them they are bad for you.. An if i think of something else i will tell you
12-16-2012, 02:37 PM   #27
nativesith
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My family doctor gave me a NSAID ( NaProxen) when I asked him for pain relief a few days ago. I took one and immediately felt worse. Quack! I told him the surgeon said he thinks this is Crohns or Ulceritve colitis. He gives me that?! I know he does not care, I feel like he is trying to kill me. I am think about taking legal action on this. This is not the first time he had given me that( I ave bottles of NaProxen)and other meds that made it worse(like Ibuprofen)within the years I ave felt like this. All he had to do was suggest the scopes and give me something for GI (like Ciprofloaxacin or Metronidazole). How could everyone here know more about this than him? I ave had doctors get angry when I ask for strong pain relief. They say I am becoming addicted, if I am addicted to anything it is feeling normal.
I also feel like going to school is a no go. Laid up for over six months and I felt terrible for like five years before that.
But thanks for the advice about Gatorade and salt. Feels like using a toilet is never normal for me.

Last edited by nativesith; 12-16-2012 at 03:04 PM.
12-16-2012, 03:10 PM   #28
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Hi Gaby, am sending you my support and I hope you will get relief any time soon. I am diagnosed with CD at the age of 13 (now 29), and also recently with IBS because my CD is in remission but I still suffer daily from constant abdominal pain. I also took morfine and oxycontin for the pain but it helped little. I suffered for more than 6 months so I can relate! Something that works for me now is the anti-depressant amitriptyline; it is also used to treat abdominal pain, and it may slow down your diarrhoea. Moreover, it makes sleeping alot easier. Since I take amitriptyline opiates are no longer needed. You could try to convice your GI to subscribe you some, since they think you have IBS. Amitriptyline is mostly used for IBS. Feel free to ask me questions if you have any. Hang in there and stay strong!
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12-16-2012, 03:24 PM   #29
ForeverCrohns
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Actually nativesith I learnt about this trick here I have had crohn's for twelve years and this is the first time I learn that adding some salt to Gatorade helps! And about naproxen also my GI have been giving me for years and only this year my other GI told me to stay away from it .. After many mistakes from my doctors I started educating myself as much as I can about crohn's so stupid doctors don't make mistakes with me
12-16-2012, 04:28 PM   #30
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Hi and welcome sorry you are going through this and it does sound like IBD and not IBS especially if there is blood. It's saying something's defo going on in there. I just hope they find out sooner rather than later for and can treat it for you. Good luck and keep us posted xx
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